What distinguishes me as a survivor? The solution appears self-evident. I’m still living three and a half years after being diagnosed with Stage IIc ovarian cancer.
If only it was that easy. However, being a survivor has many distinct meanings for clinicians and patients, ranging from clinical criteria and test findings to emotional and physical milestones.
What does it mean to be a cancer survivor?
“Both the National Cancer Institute (NCI) and Roswell Park clinically classify a person as a cancer survivor from the day of their cancer diagnosis onward, for as long as they are alive,” says Mary Reid, MSPH, PhD, Director of Cancer Screening and Survivorship at Roswell Park.
However, most cancer patients will tell you that the day they found out they had cancer, they did not feel like a survivor in the least. I certainly didn’t. Instead, I was terrified and perplexed. While my doctor offered me optimism by informing me that my cancer had been detected early and that my prognosis was favourable, I was concerned about how I would react to chemotherapy and whether it would work. But on that day, I also determined to do everything in my power to get through the treatment and fight tooth and nail to make it through.
Four months later, I completed the final of 18 weeks of severe chemotherapy treatments. Despite my shattered state, I’d achieved what Dr. Reid refers to as “the operational definition of a cancer survivor.” It’s safe to say that many patients regard themselves as survivors the day their therapies are completed.” For many, that description is literal, as they ring the Victory Bell at Roswell Park to mark the conclusion of treatment.
That day, though, I did not ring the bell. Even though my cancer indicators were in the normal range after blood testing, I wasn’t ready to celebrate success. When I realised that I wouldn’t have my IV port removed for a year, “just in case,” I was disappointed. While there were no evident signs of ovarian cancer on my initial post-chemo CT scan, the scan revealed a cyst on my liver, which needed to be evaluated again in a month. While cysts are frequent and often transitory, this discovery added to the uncertainty.
Is It Cancer-Free or in Remission?
The liver cyst was gone the following time I was photographed, and I was able to move on to the next stage of my cancer treatment: total remission. The distinction between being in remission and being cancer-free is often misunderstood by patients, and even doctors may use the terms differently.
The National Cancer Institute distinguishes between remission and cancer-free status. Remission indicates that your cancer’s signs and symptoms have decreased or disappeared, and it can be partial or total. Complete remission indicates that all clinical indications of cancer have disappeared, as determined by tests, physical exams, and scans. Complete remission is also known as no indication of sickness by certain clinicians (NED). Recurrent cancer is cancer that returns after a period of time when it could not be discovered. The cancer may return to the same location as the previous tumour or to a different part of the body. Some doctors may declare you cured or cancer-free if you have been in complete remission for five years or more.
When did I eventually consider myself a survivor, on that continuum from diagnosis to attaining the miraculous five-year (and beyond) cancer-free mark? That wonderful day for me came a year after my first diagnosis, when all of my tests and exams came back clean — and my chest port was finally removed.
What Is a Survivorship Strategy?
According to Dr. Reid, cancer survivorship is concerned with a person’s health and quality of life throughout and after treatment, as well as at the end of life. “Regardless of your prognosis, a cancer diagnosis is a devastating event that can affect you, your family, and your caretakers for many years,” says Dr. Reid. “Continued healthcare and follow-up treatment, late effects of treatment, second cancers, and quality of life for the patient, their relatives, and carers are all addressed in survivorship care.”